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Old 01-08-2016, 09:39 AM   #13
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: Working thread - what do you think the HER2+ standard of care should be really?

My brain tumor tested positive for GATA-3, usually found in luminal (HR+) breast cancer types -- but I'm all HER2+/HR-. A cancer researcher told me that platinum based chemo was less effective and not needed really with this mutation. Carboplatin has the secondary action of depleting magnesium firing treatment but my magnesium levels were crazy loe at time of diagnosis and stikl out of range until I really researched magnesium replenishment and used a multi-approach that makes cal-mag supplements pale in comparison. This makes me think that I didn't need Carbo at all, TCH might have been enough in my case.

This is another time where up front nutritional assessment coupled with data and research can save $ and patient pain and suffereing. I have tinnitus in my right ear from carbo, plus I can't take aspirin anymore and it made my limbs weak for a couple months after treatment was done.

Why not test for GATA-3 up front, why waituntil there are mets?
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.

Last edited by agness; 01-08-2016 at 09:40 AM.. Reason: Clarifying
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